Messages to others living with HIV

“HIV is another education on its own, it is another school of its own. It enlightens you, it exposes you, and it educates you.”

The people we talked to ‘did not want to preach to’ the users of this website. Instead, HIV was thought to be a very individual journey and people needed to make their own choices: “It’s a personal battle. We all react in different ways.”

Says that reactions to being HIV positive are all different and follow no set course. (Read by an…

Age at interview 30

Gender Male

Age at diagnosis 27

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However, people did talk about the things they would have liked to have known earlier, and we summarise their suggestions here:

  • Remember, you can always make some kind of choice in how you respond to the virus.

Describes how he reacted to – and tried to deal with – the sudden prospect that he might die.

Age at interview 37

Gender Male

Age at diagnosis 24

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  • It is your life, so take your time if you can, consider people’s advice, and work out what is right for you.

Explains how you could deal with being preached at: You can always change your doctor if you are…

Age at interview 39

Gender Male

Age at diagnosis 18

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  • A number of people felt it important to live in the ‘now’, not get caught up in fears about what the future may or may not hold:

“Live every day like it is your last,” said one man, “and don’t worry about what you can’t change, because you can’t change it.”

  • Find a balanced way to live with the virus, such as avoiding “HIV-information overload,” not allowing HIV to take over your entire life, and allowing HIV to naturally settle into the background of your life.
  • Keep your feet on the ground, learn more about yourself, be yourself and respect yourself.
  • Remember there will always be ups and downs, “but that is true of anyone’s life.”

Says people should avoid allowing HIV to take over their lives and explains what they should…

Age at interview 37

Gender Male

Age at diagnosis 36

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He has found a way to relate to the virus that makes sense of his experience. (Read by an actor.)

Age at interview 38

Gender Male

Age at diagnosis 35

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Gives advice on caring for the self and balancing HIV with the rest of your life.

Age at interview 46

Gender Male

Age at diagnosis 27

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  • Remain hopeful, since hope is realistic if you can get modern treatments.
  • “Believe when the doctors say that you can actually remain well – this is not the end of the line.”
  • Remember that you may well die from a cause other than HIV!
  • Remember that recovery may be quite slow if you have been very ill.

Describes how people with HIV can shift their thinking to do what they want to do and avoid…

Age at interview 43

Gender Female

Age at diagnosis 42

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  • A new diagnosis can be frightening, however, even those who had experienced anxiety or depression believed it was important to be cautiously optimistic.

With 8 years of experiences, he talks about how to reduce the impact of health problems.

Age at interview 52

Gender Male

Age at diagnosis 44

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  • Even if having fun and being of good humour could be a challenge at times, remember that happiness is a part of life: “Do the things that make you feel good.”

A husband and wife who both had HIV tried to find the humour in nursing their child who was ill…

Age at interview 40

Gender Male

Age at diagnosis 35

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  • Accept that life is a challenge: “Some of us went through a lot to be where we are now,” and that you sometimes need to be strong and try to think positively.

Drawing from his 10 years of experience, he summarises his advice about the life ‘journey’ for…

Age at interview 39

Gender Male

Age at diagnosis 28

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Talks about accepting as well as ‘fighting HIV so as to support health & wellbeing. (Read by an…

Age at interview 33

Gender Female

Age at diagnosis 27

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  • Challenge the way that HIV is stigmatised, even if you just challenge your own ideas.
  • Accept the HIV crisis and the fact that many people are unknowingly infected with HIV.
  • Remember that HIV positive people are valuable members of society.

Makes an appeal to the community explaining why HIV should be discussed openly and not…

Age at interview 63

Gender Male

Age at diagnosis 51

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  • Use condoms in anal and vaginal sex to protect those who are not HIV-positive.
  • HIV-negative people: “Don’t be blasé about it. If you’re negative, stay negative.”

Explains some potential problems with HIV treatments that make it well worth HIV negative people…

Age at interview 39

Gender Male

Age at diagnosis 20

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  • Come forward for HIV testing and take control because: “If you know your status early enough, it can actually prolong your life, instead of waiting for your immune system to be damaged.”

Thinking about AIDS and death

Many people said they initially believed that being diagnosed with HIV meant death: "At the point of knowing your status, you think that your life...